10 posts from November, 2017

Speaking out for Lung Cancer Awareness Month: “We’ve got to get rid of the stigma”

Posted November 14th, 2017 by

November is Lung Cancer Awareness Month, and we’re sharing members’ encounters with stigma and the automatic association with smoking. Lung cancer rates are increasing among nonsmokers, and some members of your community are raising their voices. One concern? The assumption that lung cancer only affects smokers could delay diagnosis and treatment for anyone (especially never-smokers) with symptoms. Some say that stigma also affects funding for lung cancer research.

Lung cancer rates rising among nonsmokers

As many as one in five people who die from lung cancer in the U.S. every year do not smoke or use any other form of tobacco, according to the American Cancer Society (ACS). “In fact, if lung cancer in non-smokers had its own separate category, it would rank among the top 10 fatal cancers in the United States,” the ACS says.

Two studies presented at the 2015 World Conference on Lung Cancer showed that lung cancer rates among nonsmokers (especially women) have been increasing over the past decade.

The ACS says that avoiding or quitting tobacco use is still the most important way people can reduce their risk for lung cancer, but researchers have found several other causes or risk factors, including:

  • Radon gas
  • Secondhand smoke
  • Cancer-causing agents at work, such as asbestos and diesel exhaust
  • Air pollution
  • Gene mutations (as PatientsLikeMe Researcher Urvi recently pointed out, some of the latest clinical trials for lung cancer are looking at the role of genetic mutations)

Member Donna on stigma (even in doctors) and raising awareness

Member Donna (LiveWithCancer) was diagnosed with stage 4 lung cancer in 2012 and outlived her poor prognosis. She says she’s trying to raise awareness of lung cancer among nonsmokers and advocate for more research as a way to honor the memory of those who’ve died.

“I was a former smoker but I had quit before I was diagnosed, and it is absolutely heartbreaking to me how many [non-smoking] people were missing the diagnosis because even doctors — many doctors — still have the attitude that smoking is the only cause of lung cancer,” she says. “I’ve lost 20-year-old friends to lung cancer that were never around cigarette smoke at all, even as secondhand smoke.”

Donna says that a person with an unexplained cough and a history of smoking, like herself, is more likely to get a CT scan checking for lung cancer than someone who has not smoked but has possible symptoms.

She has a friend who was in his 40s and was a cyclist who biked “many, many miles every week” and started experiencing unexplained symptoms.

“He never, ever smoked and so it took the doctor a long time to finally look at whether perhaps his lungs had an issue,” she says. “And on his medical records, his wife told me, they wrote ‘patient claims he never smoked.’ They could not even accept that he was telling the truth.”

Her hope in spreading awareness? “We’ve got to get rid of the stigma, first with medical personnel so that they won’t ignore symptoms, but then just among the public because people just … they’re just not nearly as sympathetic with somebody that’s got lung cancer as they are with somebody that’s got breast cancer or any other cancer, really.”

In the lineup of different kinds of cancer, smoking has the strongest link to lung cancer, but researchers say that it can cause at least 14 types of cancer (as well as heart disease). So concrete stereotypes like “smoking=lung cancer” and “lung cancer=smoking” are flawed — and there are many health reasons to quit tobacco use.

Member Jacquie on “putting stigma aside”

Member Jacquie (Jacquie1961), who’s part of the 2016-2017 Team of Advisors, has talked in the forum about how people’s first question when they hear “lung cancer” is “Did you smoke?” or “Do you smoke?”

While those questions used to make her mad, now she takes them in stride and tells people that she used to smoke but quit 17 years ago.

“First and foremost, you have to put that stigma aside and not be embarrassed because I wasn’t,” Jacquie says, noting that other environmental factors play a part in lung cancer risk, such as air pollution’s role in the surge of “non-smoking” lung cancer in China.

“I am pleased to see more attention lately on new breakthroughs for the treatment of lung cancer,” Jacquie mentioned in the forum in 2015. “I think that getting rid of the stigma that it is not just a smokers’ disease is the first step in getting attention.”

On PatientsLikeMe

Join a community of more than 7,000 people living with lung cancer. How are you observing Lung Cancer Awareness Month? What would you like the public to know about the disease and related stigma?

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Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”

Posted November 9th, 2017 by

Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public.

Then came the facemasks. The model, who hails from New Orleans but now lives in Dallas, had to cover her airway with a mask to avoid infection because she was undergoing chemotherapy to treat lupus.

“I was like, ‘Dang it – now people are really looking at me,” she says. But that was a turning point. “It was like God was telling me, ‘I’m going to show you that you’re going to love yourself, even if I have to force you to notice it.'”

We recently talked with Jokiva about her experiences with lupus, finding her voice on social media, exposing her struggles and rising above online trolls.

Jokiva Bellard lupus rash on face

Jokiva’s lupus diagnosis

Jokiva was 17 and a senior in high school when she started experiencing back pain and a rash, initially thought to be eczema. When the rash didn’t go away with prescription eczema cream and she also started having pain in her knees and legs, she saw multiple doctors and finally a rheumatologist who diagnosed her with lupus.

Lupus is a chronic autoimmune disorder where the immune system attacks healthy cells and causes flare-ups affecting the skin, joints, kidneys, heart and blood cells.

Jokiva has systemic lupus erythematosus (or SLE, the most common form of lupus, which affects many tissues in the body) and discoid lupus (which can cause rashes or skin plaques, especially on the face and scalp). She’s also had lupus nephritis, which attacks the kidneys, and two cases of kidney failure.

Jokiva’s mother also has lupus, which helped point doctors to the correct diagnosis. For many people with lupus, it’s a long road to diagnosis because of the various combination of symptoms people experience, from joint pain and hair loss to high blood pressure and lack of a monthly period (lupus mostly affects women of childbearing age, but men, children and teens can also develop the disorder, according to the Lupus Foundation of America).

“Literally in medical textbooks there’s only one paragraph describing lupus,” Jokiva says. “So when you go to the hospital, these doctors don’t know what’s going on with your body because they don’t even know what lupus is attacking, they don’t know that it is lupus that’s doing this.”

Viral video launches lupus advocacy

In 2016, Jokiva experienced her second kidney failure. Her face was completely swollen and her rashes were the worst they’d ever been. She gained about 60 pounds of fluid, and had blood clots in her lungs and ulcers in her stomach, which caused her to vomit blood.

“My face swelled to the point where I couldn’t breathe,” she says. She received chemotherapy to treat her severe lupus flare, which caused her hair to fall out.

Rather than turning inward, Jokiva decided to post a selfie video on Facebook. Through social media, she had started to connect with other women who were living with lupus or other conditions that affect their skin, hair or appearance (from acne and eczema to cancer requiring chemo).

“I really debated [posting the video], because right then at that moment, my rash was completely bad, all over my face – I was to the point where blood clots were coming out of my lips,” she says. “And because of the fact that people used to look at me in public like I was so disgusting. But I kept having my husband tell me, ‘You’re so beautiful,’ and my mom, she was telling me, ‘Oh forget what anybody else says.'”

“So I was like, let me just post a picture and tell my story to my friends on Facebook and see how they feel,” she says. “I made a video and said, ‘Make sure you guys take your medicine and listen to your doctors because life is too short, because you don’t know what’s gonna happen.’ That first night, the video had 114,000 views. It was just for my Facebook friends but it ended up circulating, they ended up sharing it. That really started my advocacy for lupus, and it turned into Instagram.”

Jokiva Bellard model headshot

100K strong on Instagram

These days, Jokiva has nearly 100,000 followers on Instagram (@_indianrosee) and she candidly shares everything from throwback photos to present-day selfies from a hospital bed. She aims to tell all women – with lupus or other conditions, or just fans who stumbled upon her page – to love themselves.

“I’m telling them that you can still be comfortable. You can have bald spots on your head because you have to do chemotherapy, but I still want you to know that in that skin that you’re in… You think that you’re not beautiful? You are still beautiful.”

She says that self-love and self-care are especially important for people with lupus. “Some people with lupus or certain diseases don’t understand that, to calm this disease down, you have to put yourself first – that means loving yourself inside and out.” She says she’s fortunate to have a good support system, including a husband who is “perfect.”

Dealing with negativity

Jokiva has faced her share of nasty comments, in-person and online. “Some people thought I had acid thrown on my face, or I had poison ivy. I started getting comments on Instagram like, ‘She should kill herself – she’s ugly as hell.'”

Her response? “Now that I love myself, I don’t care what anybody says about me. I let it roll off my shoulders… I had to build that confidence and it was not easy. It took me a whole year to build that confidence. I had a couple times where I was gonna delete my Instagram but there’s more love than hate – I had to realize that.”

Jokiva says a handful of negative people don’t have the power to cut her off from a community that looks up to her and her message.

“It’s not going to be easy — you’re not going to wake up tomorrow and love yourself,” she says. “When you get that empowerment, that self-love, everyone around you starts to see that and they look past the skin disease, they look past that disease that you’re walking with, anything that you have – they look past that and see the person that you are. You can be who you want to be. Don’t set aside your goals just because something is trying to block your blessing. Just keep pushing, just keep moving forward.”

Jokiva says she’s been inspired by the most caring healthcare professionals who’ve helped her over the years and even shed tears with her. Lupus interrupted her schooling and career plans after high school, but now she’s getting back on track to pursue a career as a nurse or nurse practitioner, and she’s also working on a book of her poems and sketches.

Join PatientsLikeMe to connect with and learn from nearly 29,000 members with SLE, more than 2,000 members with discoid lupus, and 1,700 members with lupus nephritis.